OUR INFORMATION DAYS

DUCHENNE PARENT & CAREGIVER INFORMATION DAYS

These days focus on giving parents and caregivers updates on DMD research, clinical trials and the new Standards of Care for DMD, to make sure you have the most up to date information on caring for your child.

Thank you to everyone who came to our fourth FREE Parent and Caregiver Information Day, on 16th March 2019 at Guy’s Hospital in London.

"I thought the entire day was perfectly paced, incredibly informative and I’m very glad I came. I’ve learnt a lot. I’ve only been part of this community for a few weeks but this day has inspired me to fight as fiercely as you guys fight. Thank you for all you do for our boys."

About Our Previous Patient Information Days:

September 2018, John Walton Muscular Dystrophy Research Centre in Newcastle

February 2018: UCL Great Ormond Street Institute of Child Health Information Day

Duchenne UK hosted its second FREE Patient Information Day on Friday 23rd February 2018, at UCL Great Ormond Street Institute of Child Health in London

This event was primarily aimed at educating parents and caregivers about:

• How their child with Duchenne could participate in clinical trials

• Current ongoing clinical trials

• Opportunities to take part in trials that are or will be recruiting in the near future.

There was also an opportunity to receive the latest care updates, and learn more about supporting the learning and education of children and adults living with Duchenne muscular dystrophy.

CLICK HERE to watch Emily Crossley's opening speech. CLICK HERE to view the slides from Session 3 entitled: "Current clinical trials and research overview followed by a Q&A".

We would like to thank all those who presented and attended the day. We are especially grateful to everyone who completed the feedback forms, CLICK HERE to view our feedback survey.

July 2017:Alder Hey Information Day

In July 2017 we invited patients and caregivers to a free information day at Alder Hey Children's Hospital, to share with them some of the trials we've funded, update them on the work we are doing, and to give advice and information about how to access research and clinical trials of potential treatments for Duchenne Muscular Dystrophy.

The sessions were focussed on what clinical trials are coming up in the UK in the next 12 months, and how patients can access them. We've created a presentation with all this information on it which you can VIEW HERE.

There were also updates on care and supporting the learning and education of children and adults living with Duchenne Muscular dystrophy..

It was wonderful for us to see so many of our community gather together and support the event. We were delighted with the feedback from the day, which you can read here by CLICKING HERE.

Duchenne UK is entirely reliant on donations to fund and accelerate the search for treatments for DMD

We partnered with Whizz-Kidz and the University of Edinburgh to win £1 million from the People’s Postcode Lottery Dream Fund to develop a dream chair for wheelchair users. Read this update from WhizzKidz

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Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

We are proud to share with you our first ever Impact Report, read about the very real impact we are having and the many things we have been working on over the past six years to end Duchenne.
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